Dementia in care homes and COVID-19

Supporting residents, supporting carers, supporting homes

Published: 12 May 2020

Published in collaboration with Alistair Burns, National Clinical Director for Dementia and Older People's Mental Health at NHS England and NHS Improvement

This is a quick guide for carers in care homes supporting residents living with dementia during the coronavirus (COVID-19) pandemic. It will discuss four clinical situations that may help to illustrate some challenges. These include:

Key messages about dementia in care homes in relation to COVID-19

  • One third of people with dementia in England live in care homes.
  • Three quarters of residents of care homes have dementia.
  • People with dementia may not fully understand the significance of, and need for, isolation.
  • A carer wearing full personal protective equipment (PPE) could be frightening to a person with dementia (for example, a mask could even bring back negative images of wartime).
  • Communication may be a challenge and clinicians may have to rely on the signs rather than symptoms of COVID-19.
  • Delirium is much more common in people with dementia – it can be distressing and cause challenging behaviour.

Understanding signs of COVID-19

The most common symptoms of COVID-19 are a cough, fever and breathlessness. However, some older people have symptoms that are different. People with dementia can have challenges in communication, which means that saying that they feel hot, for example, may not be straightforward. Carers should look for signs rather than the symptoms of COVID-19. Signs are things that doctors and clinicians observe; symptoms are things people complain of, such as a headache.

Practice example: Mrs Patel

Mrs Patel is aged 83, has had Alzheimer's disease for four years and has been in her current home for 18 months. She has diabetes and heart failure and is quite frail. She used to be visited by her husband every day, but that has stopped because some of the other residents in the home have COVID-19. Mr Patel has noticed during their phone calls and the Skype calls (which their granddaughter organised), that his wife is not her usual self - she has become agitated and is easily distracted. She has no complaints, is sleeping well but is off her food and has had some diarrhoea. The care staff wonder whether a mild sedative would help. A care worker takes her temperature and finds it is 38.6°.

As carers, you know the resident best of all, and the change that could indicate they have COVID-19 can be as subtle as the person just ‘not being themselves’. It's a bit like recognising someone with dementia may be in pain: by observing their behaviour. For situations like the example above, a clinical assessment should be carried before any consideration of starting a sedative medication.

Sometimes, people with dementia can be upset about being cared for by someone wearing PPE. Here are a few things you can do to ease any stress:

  • Have your name and picture clearly visible on clothing.
  • Laminate a smiley face and flowers on PPE.
  • Use tone of voice and open body language to demonstrate warmth.
  • Draw or use written words to communicate where appropriate.
  • Explain why you are taking a sample – these may need to be repeated.
  • Play some of the person’s favourite music to aid relaxation.
  • Ensure hearing aids and glasses are worn and working.

Helping residents with confusion

Confusion is common in older people. The medical term ‘delirium’ describes episodes of confusion which are caused by a physical illness such as a chest infection or urinary tract infection. What happens is that the infection upsets the normal functioning of the brain and can cause symptoms such as loss of memory, poor attention, agitation and sometimes visual hallucinations (seeing things). Confusion comes on quickly (sometimes called acute confusion), and people with dementia are 30 times more likely to become confused.

Practice example: Mr Wang

Mr Wang is 73 and was recently admitted to his care home, because his wife and family feel they are unable to care for him at home and need some additional support. He has had Alzheimer's disease for five years. He settled into the home and waves at his family when they leave after visiting. He has made friends with another Chinese gentleman in the home. One morning, his carer notices that Mr Wang is particularly tired and reads from the night staff reports that Mr Wang has been up for three hours the night before, pacing around the home looking for his room. He has been going into other people’s rooms and taking their clothes back to his room and folding them repeatedly.

Mrs Wang visits later that day and is upset because he did not recognise her – she had been told that this could be one of the symptoms of dementia, but this is the first time it's happened. She's noticed for the last few days that when he's been to the toilet there is a bit more of a smell than usual from his urine. Over the next day, he becomes much more agitated and his sons are called in to help calm him down. His GP prescribes some antibiotics and over the next week he gets back to his normal self. The staff ask the family about his obsession with clothes. The family say he owned three dry cleaning shops and had worked in the garment business all his life. The care staff distract Mr Wang by asking him to help to organise the linen and bedsheets in the home.

Infections can present in different ways in older people, and infections of the urine (particularly if people become dehydrated) are common. Using something like This is me from the Alzheimer’s Society helps bring a person’s history to life and can help carers understand behaviours. Confusion in people with dementia and COVID-19 can be prolonged and the symptoms can be more severe.

Managing behavioural challenges

It is not uncommon for residents of care homes to have behaviour which challenges. This can result in a call for a prescription of anti-psychotic medication or sedative to manage behaviour.

Practice example: Mr Smith

Mr Smith is 69, has frontal dementia and has been in his current care home for a year, as his partner could not meet his needs at home. Mr Smith does not appreciate that there is a problem, saying that he does not understand why he cannot go out as he always did. He becomes agitated when he tries to leave the home and is told by staff that he has to stay. He has never been aggressive but has raised his fists to staff when they stop him opening the front door. He was in hospital recently with a chest infection and tested positive for COVID-19. The care home contact the GP and ask her to prescribe an antipsychotic to control his behaviour. He is on a Deprivation of Liberty Safeguards (DoLS) order.

The home receive advice from the local community mental health team. As part of the discussion with Mr Smith's partner (who has had the illness, is now recovered and is symptom-free), the home agreed that he can visit and sit in the garden at a 2-metre distance. Through conversations with his partner on the phone and in the garden, Mr Smith begins to understand the need for isolation, which is why the front door of the home is locked. The staff put visual images on the front door to remind Mr Smith not to go out. He becomes less distressed and does not need antipsychotic medication.

A personalised care plan to manage behavioural disturbances is important for people with dementia. Often, a person-centred approach can help diffuse such behavioural disturbances. Alternatives to drugs should be tried before prescribing medication. Specialist advice should be sought if medication is being considered. There is excellent guidance on assessing mental capacity.

Supporting residents with end of life care

It is always upsetting for care home staff when a resident dies and, during the COVID-19 crisis, this is likely to happen more often. A resident could have lived in the home for some years and is seen by the staff as a member of their own family. It may be particularly difficult with the restriction on family and relatives visiting.

Practice example: Mrs Jones

Mrs Jones is 87, has mixed Alzheimer’s disease and vascular dementia and has been in her current home for five years. She is recognised as being in the last days of her life and has an advance care plan, which states she does not want cardiopulmonary resuscitation. She has symptoms of COVID-19, but has not been tested for it. She has difficulty breathing and seems distressed. Mr Jones, who has been married to his wife for 68 years, is 89, quite well and, up to a few weeks ago, was visiting her every day. He has been supported by the Alzheimer’s Society and is in regular contact with his dementia advisor. Mrs Jones has been placed on an end of life care pathway and has been prescribed hyoscine and morphine sulphate. Mr Jones has been provided with PPE and so is able to sit with his wife during the last hours of her life. He was holding her hand when she died.

Care at the end of life should be personalised. The symptoms of someone with dementia dying are the same as for individuals without dementia. A bespoke care plan allowed Mr Jones to be able to be with his wife when she died. Advance care plans can indicate a person’s wishes at the end of their life. There is some further guidance in My future wishes.

Further reading

Support from SCIE

SCIE's COVID-19 hub contains more relevant information including safeguarding, supporting people who are isolated and vulnerable, and infection control. It can be used when supporting and safeguarding adults and children during COVID-19, and can also be shared with community groups.